Op-Ed: Are we safe in our genes now?
May 24th, 2008
By Susanne Haga, PhD
This Op-Ed appeared in the May 24, 2008 edition of The Herald-Sun (Durham, NC).
We all have genes. Some are good and some not so good. But one thing is for sure, we are all genetically predisposed to one disease or another. And now, we will all have legal protection from health insurers and employers who might want to discriminate against us based on those genetic predispositions.
After lingering in Congress for some 13 years, the House passed (by a vote of 414-1) a revised version of the Genetic Information Nondiscrimination Act (GINA), which had been unanimously passed by the Senate a week earlier. As promised, the president signed the bill into law last week. The question is: are we now safe in our genes?
As a professional geneticist working in science and health policy, it seems to me the answer is yes, but only to a degree.
Those who tirelessly lobbied for passage of the bill said that without GINA, the fear of discrimination would lead patients to decline medically valuable genetic testing and cause the public to shy away from research that could eventually yield medical breakthroughs. Although few cases of proven genetic discrimination have come to light, many people have testified about their struggles with loss of insurance, increased insurance premiums or lost jobs -- all of which cast a shadow over an otherwise hugely exciting time in medicine and research due largely to advances in the fields of genetics and genomics.
However, it is not at all certain these issues will be resolved with GINA’s passage, at least not in the short term. Will patients now ask their doctors to order that genetic test they declined long ago? Will prospective research participants be more likely to sign up for that genetic study they saw advertised in the paper? Will consumers be jamming Web-based genetic testing companies to see what their genome has to say about their health and behavioral proclivities? Maybe, maybe not.
Widespread change in the public’s behavior will pivot on at least two factors. First, the public has to gain some real confidence and level of comfort that they can have their genes analyzed for whatever purpose without worrying that their HR representative or insurance claims agent will flag their results. After more than a decade of discussions about the risk of genetic discrimination and numerous polls showing the public’s fears of such abuses, these concerns are not likely to disappear overnight.
Second, in order to feel comfortable with our genes and genomes, whether in a research or medical situation, people must be made aware about these new protections or they will benefit only the select few who know they even exist. Through news coverage of the bill’s passage, some will hear about it. But perhaps the key to greater public awareness lies in the medical community. For now, at least, most people still receive genetic testing through their doctor, which makes the doctor’s office the most logical place for them to learn of these new safeguards. It’s time for medical and genetics organizations to encourage their professional members to increase awareness on a broader level. A brochure or two in the clinic wouldn’t hurt either.
Even in the rosy glow of the bill’s signing into law, we need to be clear about just what the new law will protect against – and perhaps more importantly, what it won’t. The legislation will only provide protection against employment and health insurance discrimination. It does nothing for life insurance, long-term health insurance or disability insurance. While a few states do offer some protections from discrimination by those insurers, by and large genetic information is still fair game. So while people’s health insurance premiums may not go up because of an increased genetic risk of macular degeneration, they may have trouble getting long-term care insurance for when their sight goes and they can no longer care for themselves.
All this said, we should not minimize what has been achieved. Thirteen years is a long time, even for Congress, to enact legislation that was of concern even before the sequencing of the human genome began. GINA’s passage is a huge step toward granting our society the health benefits of national and private investments in the field of genetics and genomics.
Like all citizens, I can now make decisions about my genome and my health without worrying too much about who might be looking over my shoulder. My genes, my decision. As it should be.